Entocort: more energy but GI symptoms no better

Been taking 9mg of Entocort for almost 3 weeks and am due to switch to 6mg in two days - the GI put me on a 9-week course altogether, 3 weeks each at 9mg, 6mg and 3mg respectively. From what I've read on the internet, that seems rather a short course. It seems more standard to take 9mg for 8 weeks, 6mg for 12 weeks and then presumably 3mg for however long.

Thought of calling the hospital to see if I can extend my 9mg prescription for another month or so. But can't decide if it's even worth it. I do like feeling human again, which I'm slowly beginning to do. A month ago it was like I was running on an almost empty tank of petrol and now that tank has been half filled. But my GI symptoms (bloating, diarrhoea, pain) don't seem to have improved at all. They are roughly the same as they were before the colonscopy, which, considering it showed that my colon was in a dreadful state, doesn't seem too good.

With that in mind, would it be a waste of time extending the Entocort course? If nothing else, it would be nice to have a bit of available energy for the upcoming summer, although that seems a tad frivolous reason to risk osteoporosis, glaucoma, moon face, etc. Of course all this is probably a moot question, as the hospital will probably refuse to extend my prescription. But I won't know unless I ask.

In early August I'm seeing the GI again to discuss taking Remicade. I'm wondering if they want me to be off the steroids completely before going onto Remicade, although plenty of people here seem to take a steroid and a biologic simultaneously.

Also on 6MP, but I started that at the same time as the Entocort so that can't possibly be having an effect yet.

Thank you for your answer.

I'm still in two minds about it. Earlier on today I felt almost like my 'old' self, but this evening it was back to listlessness. I'm never gonna have full energy when everything I eat makes this much of a meal passing through my intestines...

At any rate I'll decide tomorrow. Only have one day left to do it and of course the hospital might not call me back the same day or, indeed, at all.

By the way, I do have disease elsewhere in my colon (and in my small bowel), but the right side is the worst affected.

You may need more time with the entocort.  I did start seeing results quickly, but was not on the other right medicine for CD.  Ento is designed specifically for CD/small intestine.  My GI wants me off of it but I can't meet his minimum requirement yet.

to risk osteoporosis, glaucoma, moon face, etc.

No moon face with this.  The other possible side effects have a much rarer chance of happening.  This is not pred.  It is made to release and treat the small bowel.  It is not a systemic drug, but rather more akin to a topical treatment.

They may be trying to get you off of it quickly due to it's expense?  If you can, try to get the time to give it a better chance to work.

Hi Pinkglitter. I am in my second month of entocort at the full dose and it has done such good for me. I am still having diarrhea, but my stomach pain is gone and I can actually function at a normal level. Entocort is designed to release in the colon only so you will not get the same side effects as you would from prednizone. I am almost done with my seond month and then the dr is weaning me down to 6mg and see how I do. I never gained weight or got moonface. From what I understand the biggest long term side effect is osteoporosis so talk to your dr about calcium supplements.